Hello All,
Here's the most recent news on what's going on with my insides:
On Friday, I had another CT scan to see how the last six rounds of chemo affected the spots in my lungs. Fortunately, there was nothing new happening, and the existing spots did not seem to change much - meaning the chemo was working - and, if anything, they got slightly smaller.
Then we spoke with a thoracic (lung) surgeon, Dr. Yolanda Colson. She said that one of the spots is pretty close to my aorta/spine area at the bottom of my left lung, and that it would be the most likely candidate to cause me problems in the future. Fortunately, it looks to have shrunk a bit due to the chemo, so she suggested that now is the perfect window of opportunity to surgically remove it. This was a bit surprising to Tom and I, as we didn't think I'd have to do surgery right away, but we agreed that it made sense to do it now when we'd have the best opportunity for the least invasive surgery. Her plan is to go in endoscopically, with the smallest incision and least amount of tissue removal possible, but the end result will depend on what she sees once she gets in there. She also plans to take out another one of the spots that is nearby. Ultimately, Dr. Colson said this type of surgery "may be a big deal to you, but it's not for me." So, we've scheduled surgery for April 22nd. I'll likely be in the hospital for 3 - 5 days, and be recovering at home from anywhere between 3 - 8 weeks depending on how the surgery goes.
We talked to my oncologist Dr. Butrynski afterwards, and he agreed that this was the best course of action right now. We talked a lot about more treatment options after surgery and down the road, and he listed off many different drugs that are commonly used to treat Sarcomas, as well as targeted radiation procedures more precise than what I had on my knee. I think it was good for both of us to hear that there are still so many options out there that we haven't even thought about yet. Given the chronic nature of this type of cancer, we also talked about the possibility of giving me a break from any treatment for a little while, which Dr. B said is definitely possible, and the further along we go, the more information we'll have to make decisions.
For better or worse, I feel quite familiar with the whole surgery and recovery thing now, and I'm not really worried or nervous (at least, not today). The care I've gotten at Dana Farber and Brigham and Women's has always been excellent, the people there really know their stuff, which definitely puts me at ease. Mostly, both Tom and I are a little disappointed that right when we thought we were crossing some big things off the list (finishing up heavy duty chemo), instead of getting a little reprieve, we're jumping right in to another big treatment. But, the timing is right, and I'd much rather get it over with than waiting it out. It just means the Caribbean cruise that we have been eyeing will have to wait another month. But at least that will give my hair a chance to grow in just a little bit more, and maybe reduce the chances of my whole head looking like a tomato after spending time in the tropical sun.
On a more positive note, yesterday was the 11th Annual Young Adult Cancer Conference at Dana Farber. Young adults (ages 18 - 34) and their caregivers from all over the country with all different kinds of diagnoses came together for some workshops, discussions and mingling. It's really only been in the past 10 - 20 years that the medical community has recognized the challenges we face in this age group that are unique to us, so there has been much more of a push to support this group independently.
I had an entourage of caregivers join me for the conference: Tom, my parents, and Tom's parents. Previously, I was asked by my psychologist to be on a panel called "To Tell or Not to Tell", discussing who and how to talk about having cancer and your experiences. As you all know, I like helping people, but I also like talking a lot, so really, it was a win-win situation for me. I was one of three people on the panel, and while we were mostly used as a catalyst for prompting discussion among the other folks there, I had several people come up to me afterwards saying how much they appreciated the comments I had contributed. Meeting and talking with so many other people and families who are going through similar things as we are was incredibly beneficial for me, and I think my lovely caregiver entourage felt that way too. It was difficult and emotional at times, but ultimately a very positive experience; I've already offered my services to help out with it for next year in any way I can... are you at all surprised?
Fortunately, in the next few weeks leading up to my surgery, Tom and I have a lot of fun and social things on the calendar to look forward to. Our freezer is still very well stocked with delicious food by the wonderful Brophy staff, despite our best efforts to eat as much as possible. But if you would like to add to the frozen stockpile, please feel free, and we'll be sure to be well fed throughout my recovery. I'll also update the Google Doc if there's anything non-food-related we might need during that time.
Thanks again for all your love and support, and we hope all is well with all of you!
-T&A
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